Does anyone suffer from Crohn's or colitis?

Thank you for that information and I agree 100 percent with everything you said .
I’m still searching after 10 years and 6 Gastro Dr’s , so many tests done ☑️ even over and over .
So many diagnoses , tried everything RX , holistic, supplements . My symptoms are getting worse every year . Esp the last year and esp last 6 months .
I’m at a loss .
Now just suffer through my days , can barely eat , throw up a lot . Had that doubled over diverticulitis pain yest that put me to my knees crying for hours .
Been to Mayo Clinic in Jacksonville in 2021 . Live 3 hrs away .
My most recent Gastro is 1 hr 15 min away but she’s all book smart only .
I’m not able to enjoy anything in this life anymore ( have such chronic fatigue now too ).
62 years old … lost a decade .
Looks like no one out there can actually help me .
Glad you are doing a bit better.
I’d take 1 day a week relief but it never happens.

@rozy288 @downhillhtr49 Welcome to Mayo Clinic Connect! You’ve come with a real problem, haven’t you? I can’t believe the doctors aren’t helping you deal with your pain!! Is it just a deaf ear when you complain? Have you tried going to a comprehensive medical center/university teaching hospital? the doctors there are more knowledgeable than local doctors. That doesn’t mean that local doctors aren’t good, they just want to have time off! I addded the link to Mayo Clinic care network. These hospitals work closely with the Mayo Clinic.
https://www.mayoclinic.org/about-mayo-clinic/care-network/network-members
I don’t know if any of these hospitals are near, or, at least, no worse than what you’ve been doing. they all have working relationships with Mayo Clinic and share in their research, etc.
Rozy, if you are still looking for a good gastroenterologist, call GARD. https://rarediseases.info.nih.gov/. They keep a list of good autoimmune doctors
Will you let me know when/if you have luck and start feeling better!?

I feel for you!

I was diagnosed in Nov ‘23
With candide and pilorie (sp?)

I was on strong antibiotics for 63 days. Screwed up my gut!

They ran scopes from top down and bottom up. Said I might have crohns but needed a pill cam to see.

They didn’t get around to running a pill cam until April of ‘24!

No idea why the delay. Much much pain in torso. Not their problem. Ha!

Then diagnosed with crohns!
Maybe also irritation from ibruprofin!

Forbade me from it and back pain increased!

Sent me to a spine doctor and I got spinal steroid injections. Helped but not a cure.

From April until June before they got me on inflexemab (remecore). First one helped almost immediately. Then not so much. Second infusion- no change. But overall, I am much better today than when I started! So?

But I have much more pain!
Abdominal cramps and pain.
And the shooting pain - severe! Like random wasp stings! So severe they cause me to shout out!

During the wait, I lost 120lbs!

I was so weak that I could barely stand up.

But now I’m gaining my strength back and I’ve gained 25 lbs.

Medicare (75 male) called me asking about the unreasonable delays!

I had no explanation so they said they were going to call the gastro and see. Never heard back.

I’ve been hauled to the ER twice. Once at mayo Rochester.

At mayo I got connected to one of the best doctors that I’ve ever had! Dr Wang. She is awesome and extremely caring! I love her!

If I didn’t live over 500 miles from Rochester mayo, she would be my gastro.

Saw my local gastro (actually assistant - I have never actually seen the real gastro) today. She’s gonna run another lab and then see me in a little over 8 weeks! Delay delay.

When I asked why the delay - she said because they were busy! But all the times that I’ve been to see her in the last 10 months - there’s never been many people in the waiting room. 1-3 people at the most! Maybe she should try working an actual 40 hour week??!!

I live in a remote western region. Where the ‘cream of the professional crop’ typically does not settle. I understood that when I moved here. But dang it! Do your job!!

So hang in there! Do as much research as you can, understanding that much of what you read on the internet is conflicting and not always the straight truth.

Check out who wrote the info.

Good (great) doctors are out there. Ya just have to dig to find them.

And even most of the great doctors, only really know as much as they learned from the last big pharma salesman!

I have learned that they don’t really get a commission on drug sales, but big pharma might pay them big bucks for putting on a seminar that no one actually attends or in a nice, plush location!

We have a daughter in law, who worked for big pharma and from other research we’ve done. And, we’ve learned

It’s your responsibility to stay alive! No one outside of great friends or family is gonna help much with that!

I ask a lot of pointed questions. I’m not anyone’s favorite patient.

I don’t care! It’s my job to stay alive and learn. And you can’t learn by not asking intelligent questions.

Sometimes it’s good to know the answer before you ask!

That way you can tell if they’re dealing off the top of the deck. Many times they are.

But it’s good to know the ones that aren’t!

I wanted to know why the constant push for RX’s?
Now I know!

Good luck and stay alive!

Many meds for chrons & colitis on the market and everyone's symptoms are not the same, I was on 1 and had bad reaction, now on Skyrizi and can't say if working or not.
The true tests are scope top and bottom.
Get a good Gastro doctor
Take care

I had Crohn's for over 45 yrs and I approve of you diet. Stay away from high rufage foods. The Meditararin Diet isn't for you. The single best thing for myself that I did was seek out a Doc who would give me Low Dose Naltrexone' (usually a rheumatologist.) The GI Doc wouldn't because "It wasn't protocol." This I did in 2019 when my small intestine was loaded with small ulcers. I tried it because of another autoimmune condition tha was bothering me and not diagnosed. Anyway, over 80% of the Crohn's people who try LDN get some benefit from it. For me, it healed my small intestine and I have stayed on it all this time. Colonoscopies taken in 2021 and this year were "Normal". I still can't eat with wild abandom but through expermentation' I have extended my diet a bit. I assume that I still have Crohn's, it's just inactive. That is my tip, for what it's worth.

Your correct about you being the one to keep yourself alive and it's been my experience that it doesn't seem to make others like you, but stay alive!
Have you tried taking Budesonide? One of the few meds that I have been in that works and since it is low does steroid, you can take longer!
Best wishes, fellow survivor!

Hello, I was treated for IBS 12 years without success. 2023, flair prohibiting even leaving my home, CT indicating inflammatory colon, Crohns, IBD or cancer supported by testing. Colonoscopy repeated, pathology- Microscopic Lymphocytic Colitis. Budesonide 20 weeks due to relapse (I did well on Budesonide 3 mg/ daily however providers will not prescribe due to adverse effects). Curently taking Cholestryramine, 3 x daily. I have had 3 second opinions on treatment. All say remain on Cholestryramine. I have followed everything, diet, stress reduction, pre and probiotics and I am not doing well. Liquid stool, intolerable pain, fatique. Seeing counselors. Family little support. My quality of life is dismal. I am reluctant to try biologicals due little research, poor efficacy and high adverse effects. I am open to input. I am grateful for this forum and hope to hear back.